ArticleJournal of medical Internet research2021
US Privacy Laws Go Against Public Preferences and Impede Public Health and Research: Survey Study.
Article in Journal of medical Internet research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
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Who cites it
4 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The Evolving Landscape of Discrete Choice Experiments in Health Economics: A Systematic Review.PharmacoEconomics · 2025Pooled it
- Dying in Darkness: Deviations From Data Sharing Ethics in the US Public Health System and the Data Genocide of American Indian and Alaska Native Communities.Journal of medical Internet research · 2025Article
- Cross-jurisdictional Data Transfer in Health Research: Stakeholder Perceptions on the Role of Law.Asian bioethics review · 2024Article
- Changing US Support for Public Health Data Use Through Pandemic and Political Turmoil.The Milbank quarterly · 2024Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundReaping the benefits from massive volumes of data collected in all sectors to improve population health, inform personalized medicine, and transform biomedical research requires the delicate balance between the benefits and risks of using individual-level data. There is a patchwork of US data protection laws that vary depending on the type of data, who is using it, and their intended purpose. Differences in these laws challenge big data projects using data from different sources. The decisions to permit or restrict data uses are determined by elected officials; therefore, constituent input is critical to finding the right balance between individual privacy and public benefits.
objectiveThis study explores the US public's preferences for using identifiable data for different purposes without their consent.
methodsWe measured data use preferences of a nationally representative sample of 504 US adults by conducting a web-based survey in February 2020. The survey used a choice-based conjoint analysis. We selected choice-based conjoint attributes and levels based on 5 US data protection laws (Health Insurance Portability and Accountability Act, Family Educational Rights and Privacy Act, Privacy Act of 1974, Federal Trade Commission Act, and the Common Rule). There were 72 different combinations of attribute levels, representing different data use scenarios. Participants were given 12 pairs of data use scenarios and were asked to choose the scenario they were the most comfortable with. We then simulated the population preferences by using the hierarchical Bayes regression model using the ChoiceModelR package in R.
resultsParticipants strongly preferred data reuse for public health and research than for profit-driven, marketing, or crime-detection activities. Participants also strongly preferred data use by universities or nonprofit organizations over data use by businesses and governments. Participants were fairly indifferent about the different types of data used (health, education, government, or economic data).
conclusionsOur results show a notable incongruence between public preferences and current US data protection laws. Our findings appear to show that the US public favors data uses promoting social benefits over those promoting individual or organizational interests. This study provides strong support for continued efforts to provide safe access to useful data sets for research and public health. Policy makers should consider more robust public health and research data use exceptions to align laws with public preferences. In addition, policy makers who revise laws to enable data use for research and public health should consider more comprehensive protection mechanisms, including transparent use of data and accountability.
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